We Try an Experiment That Fails
So, I have ILD. That's official. My respirologist thinks maybe it can be kicked out of me with high-dose prednisone and I am to start that in July 2009 for 12 weeks. It is a really really difficult 12 weeks (40mg prednisone). I blow up like a balloon everywhere! I have stretch marks in places a person would not normally 'stretch'. I have stretch marks on my abdomen I did not get while I was pregnant (twice)! I feel awful and bloated and not any better. My joints are still under control but nothing else is. I find it uncomfortable to move. My mood is all over the place. I am a miserable human being and after 11 weeks I beg to be tapered down. I can't take it anymore and there has been no resultant change in my lungs. We give up this 'experiment'. I guess it was worth a try.
It's now September 2009 and I'm starting the weaning process. I should be totally off prednisone by Boxing Day (last pill!). I am excited to get off the damn stuff. It is doing nothing for my lungs so why I am taking it? Of course, little did we know, it was doing something for me - it was masking all of my other symptoms. I'm still feeling good. Still going to work, joints still working - except for my knees. I have always had a problem getting back up and haven't kneeled or squatted in order a year. Things are getting heavier to lift, though. I am starting not to put back my heavy binders and leaving them on the table and hoping someone else will need them and put them away. :o) OK, so they just stayed there on the counter for months - it's my work area - who cares?? November 2009, still OK. Still functioning at work in the beginning, but then I get what I think is the 'flu', feeling awful, feverish, throwing up. I get better but for some reason now I can only eat really soft foods. Meat is a real problem. I can't chew. I have no appetite. I lose 20 pounds in a month and a bit. And I'm having trouble staying awake. I am so exhausted it's tough to get through a day at work. By Christmas Eve Day I am just waiting for the announcement of when we can go home early. My boss stops by my desk to 'chat' and say 'Merry Christmas' at the announcement time and I am so tired I just want to go home and sleep. I'm a little worried about driving.
I manage to drive home and fall asleep in the chair. All Christmas it is a matter of napping, waking up to try to eat dinner, open presents and have another nap. By Boxing Day, the day I was so excited to completely get off the prednisone, I cannot do 'Christmas' another day. My parents come and pick up the kids to take them to their house and I stay home and sleep. They bring food but I do not eat. My husband's work is so super busy and he's working strange hours and at least 12 of them at a time. He's worried about me. I had the week off after Christmas, which is good, because I cannot stay awake. I have my oxygen on all the time now.
It's now time for me to go back to work and I just can't. I call in sick and my husband calls my respirologist who tells him to take me to emergency. Well, I've never gotten in from being an emergency patient so fast. They took me right away and hooked me up to their oxygen as my pulse system concentrator is not keeping up to my shallow breathing. I am a mess. I unhook myself from my 'probes' and walk down the hall to the bathroom. I can hardly make it back. They take a reading of my oxygen levels before hooking me back on and it's below 60 and falling. I am surprised I am still standing (well, almost standing). I am admitted for what will be the most hellish journey of my life.
It's now September 2009 and I'm starting the weaning process. I should be totally off prednisone by Boxing Day (last pill!). I am excited to get off the damn stuff. It is doing nothing for my lungs so why I am taking it? Of course, little did we know, it was doing something for me - it was masking all of my other symptoms. I'm still feeling good. Still going to work, joints still working - except for my knees. I have always had a problem getting back up and haven't kneeled or squatted in order a year. Things are getting heavier to lift, though. I am starting not to put back my heavy binders and leaving them on the table and hoping someone else will need them and put them away. :o) OK, so they just stayed there on the counter for months - it's my work area - who cares?? November 2009, still OK. Still functioning at work in the beginning, but then I get what I think is the 'flu', feeling awful, feverish, throwing up. I get better but for some reason now I can only eat really soft foods. Meat is a real problem. I can't chew. I have no appetite. I lose 20 pounds in a month and a bit. And I'm having trouble staying awake. I am so exhausted it's tough to get through a day at work. By Christmas Eve Day I am just waiting for the announcement of when we can go home early. My boss stops by my desk to 'chat' and say 'Merry Christmas' at the announcement time and I am so tired I just want to go home and sleep. I'm a little worried about driving.
I manage to drive home and fall asleep in the chair. All Christmas it is a matter of napping, waking up to try to eat dinner, open presents and have another nap. By Boxing Day, the day I was so excited to completely get off the prednisone, I cannot do 'Christmas' another day. My parents come and pick up the kids to take them to their house and I stay home and sleep. They bring food but I do not eat. My husband's work is so super busy and he's working strange hours and at least 12 of them at a time. He's worried about me. I had the week off after Christmas, which is good, because I cannot stay awake. I have my oxygen on all the time now.
It's now time for me to go back to work and I just can't. I call in sick and my husband calls my respirologist who tells him to take me to emergency. Well, I've never gotten in from being an emergency patient so fast. They took me right away and hooked me up to their oxygen as my pulse system concentrator is not keeping up to my shallow breathing. I am a mess. I unhook myself from my 'probes' and walk down the hall to the bathroom. I can hardly make it back. They take a reading of my oxygen levels before hooking me back on and it's below 60 and falling. I am surprised I am still standing (well, almost standing). I am admitted for what will be the most hellish journey of my life.
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